any body have info on being denied disability for my grand daughters CF ? What to do now ?? thanks

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Desiree - posted on 06/22/2013

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Hi Bonnie,My daughter also has CF and was denied social security. We contacted the Cystic Fibrosis Foundation and they have their own set of lawyers who sent us information about what needs to be, in order for a CFer to qualify. NOT every CF patient ACTUALLY qualifies for social security as we thought and as MANY people believe. In fact, although my daughter has CF she is actually in very good health for a CF patient... "too healthy" basically to qualify for social security. If you or your daughter would ever like to talk about anything please feel free to send me a message anytime. You can also find me on FB as "Desi Blair" with the same profile pic as here.

Also in the mean time while you are getting attorney and waiting on appeal you should document everything with her and her CF. Document every thing medical and other wise. Be very detailed. Document all her difficulties and moods. And how the CF effects her everyday. Also things that she may have to miss out on. This may be tedious but worth it. Write down everything you can think of.good luck

Is this your first denial? I've not applied for a child but I have went through it with myself. You should now contact an attorney that specializes in disability. The attorney can file an appeal. They will work for you and help your granddaughter get the disability she needs. You shouldn't have to pay anything up front they will take a certain percentage of her back pay. Hope this helps God bless.